P1484: UNDERSTANDING STAKEHOLDERS’ KNOWLEDGE ON SICKLE CELL DISEASE AND THEIR PERCEPTION ON THE PATIENT JOURNEY BY SOCIAL MEDIA LISTENING ACROSS EUROPE
Authors: D. Bras, C. Bento, S. Aasaithambi, J. Chauhan, I. Moital
Journal: HemaSphere (2022)

Background: Sickle cell disease (SCD) is a common hematological disorder that affects millions of people worldwide. SCD poses a significant disease and financial burden, not only on patients but also on their families. Vaso-occlusive crisis are a common painful complication. However, despite their severe pain, patients with these crises are often undertreated. Social media platforms are increasingly being used in healthcare, including in the context of SCD, for generating content and sharing experiences, feelings, and perspectives between peers. Aims: To gain understanding on patient awareness on SCD to help map perceptions around patient journey through social media analysis across Europe. Methods: Data was collected retrospectively from April 2019 to April 2021 on SCD specific terms in 14 European countries (Figure 1A). Data sources were blogs, forums, and social networking sites (including Twitter, public Facebook, YouTube, and Instagram). The Talkwalker tool was used to collect and aggregate publicly available data. Results: A total of 317.9K conversations on SCD were detected, mainly on Twitter (93%). Most conversations were among patients (61%), followed by their family and friends (16%), caregivers (4%), healthcare professionals (HCP) (3%), and others (16%). A total of 945 posts of relevant patient-centric conversation were analyzed. The highest share in conversation came from the UK (56%), followed by France (24%), and Germany (4%). Most patients were females (73%) and ≤30 years old (75%) (Figure 1B). Patient journey stages (Figure 1C) were addressed in 52% of the conversation. Among these stages, symptoms (56%) were the most discussed, where pain episodes, pain in general, and vaso-oclusive crises (often associated with pain) were the most common topics. The second most discussed stage of patient journey was treatment (44%); blood transfusions was the most mentioned treatment (34%), which was generally found to be effective. Hospital visits or hospitalization were mentioned in 11% of the conversations, and 62% of them included crisis that patients faced due to symptoms. Impact on quality of life was also extensively discussed among patients, with emotional impact (56%) being the most prevalent, followed by physical (47%), social (30%), and financial (10%) impact. Unmet needs were derived from 24% of the conversations. Most frequent unmet needs were lack of awareness of SCD by HCP and the general public (42%), and lack of empathy and support from HCP (24%). Racial bias was highlighted as a concern by patients who had their symptoms questioned or dismissed by their care team. Image:Summary/Conclusion: Social media, especially Twitter, are mainly used by young patients with SCD in Europe. Approximately half of the conversation between users were related to the stages of patient journey, being symptoms and treatment the most discussed topics. One-fourth of the conversations mentioned unmet needs, where both a low level of awareness of SCD by HCP and the general population and a lack of support from the HCP was perceived by patients. SCD patients actively campaigned to raise awareness of the disease, whilst also expressing the physical and emotional impact that SCD had on their lives.